3.13.11

Dedication Day

On Sunday, February 21st, Raina was dedicated at our church. For the occasion, Laura put her in the world's most adorable dress. She was an instant hit... and the pictures speak for themselves. On an obviously more important note, it was an incredible blessing to be able to stand in front of the congregation and recognize Raina as an official part of our family. She is truly the most precious gift from God and it was a privilege to make the commitment publicly to raise her in a manner that will please Him, with the prayerful hope that one day she will understand Jesus' love for her. We praise Him daily for her life.

Welcome To Holland

I know it's been a long time since I've posted, but since we were just given some concrete dates for Raina's upcoming treatment, I figured I'd let Laura share some things from her heart. I do love her so much, and when I get to see her in her role as a mother on a daily basis, I fall even more in love with her. The following are Laura's words.

As most of you know, we will be seeking medical care for Raina at Cincinnati Children’s Hospital. The surgeons at the Colorectal Center are known worldwide for their pioneering work and research in children with anorectal malformations. Therefore, there is no question in our minds that Cincinnati is the best place for Raina to be. We are blessed to have insurance that allows us to seek medical care at whatever institution we desire, even to travel out of state. We have received conformation of our itinerary and we'll be heading to Cincinnati on March 9-12. Raina will be undergoing many tests while there, including a few in the OR under anesthesia to determine what exactly is going on with her and the best treatment of care for her future. A date has not been set for her initial surgery yet. They will give us their first available OR time. We will be meeting with the colorectal surgeon, Dr. Levitt, whom we already love though we have never met him. Raina will be seen by a urologist and a pediatric gynecologist in the OR as well. Writing all of this makes my mommy heart hurt. I hate all that she will endure and I ask for your prayers for her and for us as a family as we walk this road together. I have enclosed a reading below that someone gave to me a while back. It is something I read often…especially on the days when I am feeling sorry for myself for my apparent lack of freedom and when I am overwhelmed by colostomy bags and endless therapy sessions. It helps me to put things into perspective again and makes me remember why I am Raina’s mom.

WELCOME TO HOLLAND By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with special needs and disabilities- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you are going to have a baby, whether biologically or through adoption, it’s like planning a fabulous trip- to ITALY! You buy a bunch of guide books and make your wonderful plans. The Colliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months or years of eager anticipation, the day finally arrives. You pack your bags and off you go! Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland." “ Holland ?!?” you say. “What do you mean Holland??? I signed up for Italy! I’m supposed to be in Italy! All my life I’ve dreamed of going to Italy!” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced that Italy , less flashy than Italy. But after you’ve been there for a while you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned. “And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

In our adoption journey, would it have been easier to go to Italy??? Less stressful??? Less painful??? To all of those questions, I answer most definitely YES!!! But, God in His infinite wisdom and beauty knew that we needed to go to Holland. And if we hadn’t, I would have missed out on the beauty in my daughter’s smile, the joy behind her giggles, and the ultimate heart-melting experience of having her grab my face with her tiny hands and say “Wo ai ni!” - (which means I Love You in Chinese). Yes, Holland is beautiful too and I thank God for the privilege of allowing me to go there. With love to you all, Laura

One Month Home... The Scoop So Far

One month ago today, we flew home from China. As cliche' as it may sound, I can't believe it's been a whole month. So much has happened in this past month, so I figured I'd catch you up on some of it. I guess I'll begin with a synopsis of the medical conditions that Raina is facing.

Raina was born with a defect that is called congenital anal atresia (sometimes termed imperforate anus). During her fetal development, her colon failed to fully descend and connect to the rectum. As a result, she was given a temporary colostomy in her upper abdomen probably within a day or so of her birth. This was done so that an exit could be established for waste. The second stage of the process would be to create an anus (anoplasty), and correctly build her lower intestine to the outside of her body. After healing, the colostomy could then be reversed. None of these subsequent surgeries took place, and she was found abandoned just before her first birthday. Within the orphanage setting, they were not equipped with the resources to help her further. So she still has her colostomy which we care for on a daily basis. Shortly after coming home, a battery of tests were conducted on her (which you can read about in my previous post). The conclusion of some of these test results threw us all for a loop, as we discovered that Raina has quite a bit more wrong on the inside than we were aware of. She was born with a minor heart defect (VSD), which seems (at least for the time being) to be functional... meaning, they would simply like to monitor her every six months to see if any changes take place in her heart that would require something further (like a surgical repair). This was a small victory, and one in which we thank God for. In a total shocker, it was determined that Raina has only one kidney. This information became of extreme importance to us because of the fact that she was originally diagnosed as having a fistula (connection) between her intestine and her bladder. With the possibility of infection and potential damage to her renal system through this fistula, her one kidney must be protected at all costs. Thankfully, the urinalysis has shown that her kidney and her bladder are normal, with no signs of damage at this point. This was again, another bit of great news... it seems that God has protected her precious kidney thus far. We are certainly "hyper-aware" of what we see in her diaper, and we have had a few scares. So, needless to say, we are anxious to have the experts at Cincinnati Children's look into this further. The next thing we learned has to do with Raina's skeletal design. She was born without the lower 3 segments of her sacrum and her coccyx (the bottom of the spinal column and tailbone). This is evident when you look at her body structure. This could become a critical component of her future in many ways. The spinal cord runs the length of the spinal column, with the bottom most part serving the nerves for bladder and bowel control. At this point, it is undetermined how much of these nerve endings are in place for Raina. From an orthopedics standpoint, she may also have future issues with the development of her hips and pelvis as she grows. We were not able to get a very clear analysis of her reproductive system, so there are many question marks surrounding that as well. As the pieces of this puzzle began to fall into place, it became more abundantly clear that Raina has the signs of what is called VACTERL association. In a nutshell, VACTERL is an acronym, not a disease or a syndrome. It is used to describe the types of anomalies (physical birth defects) children may have when they are born. A child with three or more of these specific anomalies in any combination may be recognized as fitting the VACTERL Association. The specific needs of each child who has VACTERL vary from child to child, as well as the severity of the anomalies. Examples of the anomalies that may occur are:

(V) - Vertebrae problems - abnormally formed vertebrae, tethered spinal cord, extra ribs, missing ribs and tailbone, etc.
(A) - Anal anomalies/rectal problems - no anal opening.
(C) - Cardiac problems - minor to massive heart problems.
(T) - Trachea (windpipe) - improper connections between trachea and esophagus.
(E) - Esophagus - part of the esophagus connecting the mouth and stomach is missing.
(R) - Renal (kidney) - abnormal kidney(s).
(L) - Limb - various hand, feet and leg problems, missing bone structures are common.
Excerpt taken from vacterlnetwork.org.

Raina has the V, A, C, and R of the acronym. After shedding our fair share of tears regarding her situation, we have settled on the realization that although this has proven a huge surprise to us, none of this has been unknown to God. He has been aware of her needs all along, and was just waiting to place Raina into our family. We are overjoyed at the fact that this incredible little girl is a part of us now. In a very short time, the Lord has given us renewed perspective. Now, that's not to say, that along with the joy, we will not experience the darkness that is to come also. We are no different than any other family that has a child with special needs. It is a roller coaster that has hills, peaks, dips, turns, spins, loops, corkscrews, and dark tunnels. Yes, it's true... we are not the same family that we were before... but we are much better now that Raina's here. With all the challenges that our futures hold together, we must remain convinced that He will never leave us or forsake us... that He is faithful... that He knows what He is doing... and that He will be glorified through our circumstances. I'm sure that there will be days when it won't be nearly as easy for me to type those words. But He is enough... He HAS to be enough. Our friend, Carol Shrader, (who exemplifies this truth beautifully) has become something of a hero in our eyes - a true inspiration of character and strength. God's blessings are hugely evident in her family's life, and, although it may be from a far away distance, we are thankful for her humble influence on our lives.

Other than that, we have been enjoying getting to know Raina. She is a total delight most of the time. She has begun to settle into somewhat of a decent sleeping pattern. She eats almost everything we give to her. She has started to say some English words (mama, bye-bye, bubbles, banana, baby, eyes, nose, toes, blocks, shoes - just to name a few) and her laugh is downright infectious. She has become a hit everywhere we go - people just can't get enough of her beautiful face. And neither can we...

One Week Already

Well it's been one week home already, and we can hardly believe where the time has gone. A little synopsis: Raina began her time at home here completely messed up with the time change. She thought that bedtime was more like 4am instead of 9pm. This proved extremely challenging to our transition back to homelife since our exhaustion level hit an unprecedented high. Coupled with the time-out-of-whack, was the world's most raging ear infection in her left ear. Turns out, she has a ruptured eardrum, for which we have her on a double antibiotic to heal. Our pediatrician said it's one of the nastiest he's ever seen, which we thought was oh so special. We pray she does not experience any hearing loss from this. She has spent the week getting to know Evan and Colin (she has taken to them both very well). And we've discovered that Raina has one incredible appetite, for which we are thrilled. She is figuring things out in her own time - and considering all the changes she has been through in the previous 3 weeks, we feel she is adjusting extremely well. She has been a wonderful addition to our family, and we still pinch ourselves that she's really here. Friday was her initial pediatrician appointment for a full examination. A plan has been developed to begin her first testing - pelvic and sacral spinal MRI, kidney and bladder ultrasound, EKG and Echocardiogram, and a full urinalysis (which will all be performed next week at the University of Chicago). When the results of these initial tests are in, we will be traveling to Cincinnati Children's Hospital to consult with their Pediatric Colorectal team, as the focus of Raina's surgeries will be performed there. Our pediatrician, as well as Dr. Levitt's team in Cincinnati, have been encouraging to us. We are fully aware of the potential future that Raina faces - the best case and worst case scenarios. Although there are many unknowns regarding her condition, we are moving forward in the confidence that she can and will be helped. I realize that I have not delved into the full details of Raina's condition (which I will attempt to clarify when the official plan is in place). I feel it will be more appropriate to share when I can clearly lay out the steps ahead, without resorting to speculation. Until then, we are simply a happy family of 5 learning to live with each other. Yes, we're tired. Yes, we've been frustrated. But no, we wouldn't change it for the world. Because when you love each other as much as we do... that's just the way it is.

Coming Home

Well, this will be my last blog posting while in China. Tomorrow we will make our final jaunt to Hong Kong, followed by a quick turnaround flight to Chicago. Today we had our appointment at the US Consulate in Guangzhou where we took the oath, and our adoption of Raina was officially recognized by the US Government. Upon landing at O'Hare airport, Raina will be granted her US citizenship, and the process will be complete. There is a sadness in leaving here. We've made friends... lasting relationships. It seems almost surreal that it's ending. All the waiting, all the planning, all the anticipating... it's finally over. When those wheels touch down on Chicago ground, Raina's new life will begin - an American life. Although we have only known her such a short time, she is one of the most incredible people we have ever known. We would give our lives for her, our precious daughter. And there is a whole group of other people whose lives have been changed forever also. The picture above is of our travel group. Every one of the people in this photo have a story to tell. Every one of these little children will touch countless lives when they return to the US. The miracle of adoption reaches far and wide... from the cities of America to the villages of China... the Hand of God at work amongst the people of the world. We say this all the time, but I'll say it again: If you would've told me 5 years ago that I'd be blogging from the other side of the globe with the most beautiful 2 year old little Chinese girl sleeping gently in the bed beside us, I would've told you "You're crazy". But that's what God does - He changes your world. Sometimes it's scary, sometimes it's exhilarating. But it's ALWAYS what's best. So there it is... The Curatolo family... coming home... no longer waiting... for Raina.

More Pictures... What Else?

We have had a lot of free time here in Guangzhou (sometimes it seems like too much), and at this point we are just looking forward to getting back home to the US. The paperwork that was filed with the US Consulate takes a few days to process, so we are in a holding period. We have our appointment before the officials on Wednesday the 4th - where we will be "taking the final oath" regarding our intentions in adoption. Until then, without much to post, (other than another pic of the beautiful White Swan) I figured I'd post the most important thing I could think of... more pictures of Raina.  Enjoy.